Our little family had a good thanksgiving, albeit somewhat lonely. Maria did an amazing job cooking delicious food but Cristian stuck to his current diet of Cheeto alternatives and apple juice. Cristian’s energy has remained high even with the chemo at the hospital and at home. He has been in a good mood, such a good thing to see!

The treatments march on which included a spinal tap this week, along with chemo. Thankfully this visit was short compared to the prior week, Cristian was back home playing before nap time.

We have continued to administer chemo at home this week, including shots. This will be the last week of shots at home for the remainder of his treatment, and the last week of chemo at home until we get to maintenance. Cristian has been a brave little trooper throughout this whole process, these past few weeks no exception.

Maintenance in sight! We have a two weeks remaining in this phase and they are planned to be lite from a chemo perspective. This will hopefully allow him to stay high energy and build up his strength. Once we get to maintenance (Christmas week) then there will be another spinal tap and chemo at home, but his body will regain strength and we can slowly transition into a more normal lifestyle. We are already looking for road trip destination, suggestions welcome!

Thank God and everyone for all of the support we have received thus far. This is not something any family should have to endure, but knowing that we aren’t along and God is leading the way helps us keep our strength.

Cristian has been having a great week. He is smiling, playing, saying new words, it’s wonderful. He plays with his sister, most of the time, until she starts hitting. We are working on that. The other big development is that his hair loss has continued. At this point he only has hair left in what is normally the bald spot of a grown man. No hair, don’t care! But nonetheless we march on and push towards the end of this chapter!

We arrived at the hospital just after 8am and started with the usual blood tests to see if his body was strong enough to handle the chemo. The results took a while to come back, but unlike last week we received positive results. We started with some fluids and waited our turn to go in. While waiting, Cristian was full of energy and even broke out into some head banging!

Once we received the green light, we headed into do the procedure (lumbar puncture) and then over to the clinic. The lumbar puncture was fairly quick as usual, but in clinic the chemo he received required a fluids before and after. Cristian was a trooper the entire day. He stayed in a good mood while watching his new binge PJ Masks and playing with cars.

We are now in a big push of chemo for the next two weeks. Between hospital administered or given at home, Cristian will receive chemo every day for the next 14 days. This will also include us giving shots 6 times which are tough, no one likes shots. These chemo’s are expected to make Cristian lose the rest of his hair, and most likely have low energy. We are also planning that Cristian will need some transfusions of red blood cells. He has had these before, each lasting about four hours, and usually gives him a good bump.

As we head towards Thanksgiving this week, our plans are to isolate and hold it just with our little family. While this is a bummer, it by far beats potentially having Cristian head to the hospital for an infection while he has no immune system. Even so, we are extremely thankful for all the things in our life. We have shelter, food, jobs, support from friends and family, and God leading the way. We wish everyone else a happy and safe thanksgiving!

What a difference a week can make! Following the rollercoaster that Cristian has been on the past couple weeks, things have been wonderful all around as he has stopped taking the steroids. He has been smiling, laughing, and playful. Another bonus is that his motion is improving as well and he has started to get a slight running movement (previously he was only speed walking like those people on the olympics). It’s been a great time for our family.

One thing we were told to expect during this phase is hair loss, and sadly it has arrived. This time his hair began falling out very quickly. Over the course of a couple days his has lost almost half the hair on his head. It is something he notices as it falls on his face, poor guy. It’s not certain if he will lose it all, but if he does then dada will go bald with him. We are in this together!

Today marks the start of the second month in this planned 2 month phase. I say planned because as we arrived at the hospital this morning for a procedure and chemo, Cristian’s bloodwork came back saying that his body is not strong enough for more chemo. Specifically his immune system is severely suppressed. This is not uncommon nor the first time it has happened to Cristian.

So this means we get another week for Cristian to recover and be a happy little boy. A bonus of this delay means that we have another week until we have to administer shots at home which no one is looking forward to. On the flip side it now pushes the finish line back a week. We are all ready to get to maintenance!

Along with all of these treatments we are also heading into the holiday season. For our family this year will be celebrations in isolation to make sure Cristian doesn’t pick up a bug and end up in the hospital. Following all of the fun that was 2020, it’s rough to have to do it again but it is what needed.

We thank all of you for the care and support you are providing us. The prayers help send healing and comfort to our family. We thank God everyday for keeping us all together and out of the hospital.

It’s been a little bit since our last update and want to keep everyone in the loop on how our little trooper is doing. First off we are happy to report that he was amazing following the last chemo treatment. He was incredibly happy, energetic, great mood, and eating! We pray nightly for God to turn the chemo to water so it doesn’t hurt his body, last week it felt like he heard our prayers.

Even with the high energy we were still cautious over Halloween and stayed in. It was hard to see him doing so well and not being able to take him out to make memories and have fun. But you can bet that next year, it’s on!

Earlier this week we went back for more chemo and have started taking steroids again for this entire week. His bloodwork prior to the chemo came back clear and everything was within range, confirming that he felt good because his body was in a good spot. Following the chemo he was great and we went back home after about an hour.

Then we gave him the steroids…These particular steroids are used to kill off blood cells, both the good and the defective kind unfortunately. For this week Cristian will be taking them twice a day. As we got to the 2nd day Cristian has sadly dropped in his energy levels, attitude, and has just not been feeling well. We can always tell when he’s not feeling well because he asks to go ride in the car. Today he asked to ride 3 times. Thankfully he has continued to eat and drink, but there is not really anything we can do to make this more comfortable for him.

A couple weeks ago when we started this phase of treatment, Cristian also received steroids for the week and they had a similar effect on him. As the week wore on he did improve slightly but not back to his happy playful self until we stopped the steroids.

We are praying for improvement the next couple days because it is painful to see our little boy feeling so bad like this.

The past week has been a bit of a rollercoaster for us. Following the chemo last week Cristian was knocked down a bit. His energy was low, he was needy, and didn’t want to do really anything. But as more days past by, he slowly got back to where he was having fun.

Through the week he did have various side affects as a result of the chemo, all of which we knew could have happened. Nausea the first couple days, occasional joint pain is knees, and even a mouth sore briefly. Some of these we can give meds for or wait for them to pass, others will continue until we finish this cycle. If the remainder of this phase goes just like this, just maybe it wouldn’t be as bad as we thought.

Over this past week Cristian has had another shift in his eating, he has stopped. We haven’t been able to find anything that he likes consistently. He is continuing to drink ensure and water which is providing some nutrition. It does have high sugar which we aren’t thrilled about and continue to strive for something that even remotely resembles balance. That’s just not his style haha. Surprisingly enough he did ask for a chicken nugget today! We had to be quick to capture the proof.

Today’s dr visit was fairly short and straightforward. No procedures or blood count requirements. We arrived and almost immediately started the chemo. While that was going we got Cristian’s blood work back. His potassium is a little low, not surprising since he’s not eating anything, so we are going to give him some supplements for the time being. The rest of the week should be quiet at home, with just some supplements. We are thankful for a quiet week together at home, without chemo.

We are thankful to God for watching over Cristian and our family as we go through this, and for the support everyone has continued to give us.

What a wonderful time we have had lately as a family. The past 2 weeks have been a blessing because Cristian has been doing so well. He is eating, laughing, playing, everything you would expect a 4 year old to be doing. Let’s not forget about his play buddy, Leena, who is almost inseparable as they run through the house getting along so well. What a wonderful time we have had.

Recently Cristian has been branching out on his TV shows, and discovered “Doc McStuffins” on Disney. He likes the show so much that he wears some toy doctor stethoscope when it’s on and asks to listen to his toys tummy. Today he kicked it up a notch and took his stethoscope to the hospital. Dr. Booboo even had a listen to his own Dr prior to getting treatment.

Following the Dr session, we found out that Cristian blood tests results showed that he was strong enough to start treatments. This means he had a spinal tap and received chemo today. It also marks the start of the final phase before we get to maintenance.

This phase will last 2 months, just like previous phases. Unlike our last phase this one does not include any planned admissions. Cristian will received some hard chemo this time though, which will lower his energy and it is expected to make him loose his hair again. We will be giving medicine at home as well including steroids and chemo via pills and shots. This will be a tough cycle on everyone.

Another aspect of this phase will include his immune system going to near zero. This means that we will be doing our version of isolation for the next 2 months. Our goal will be to stay out of the hospital and just get through this. We ask everyone to pray that our family stays safe and healthy as we go through this last chapter.

Today Cristian was set to start the next phase of his treatment, Delayed Intensification. As the name implies this phase will not be a walk in the park, but none of them have been. The chemo and medications Cristian receives this phase will have similar effects on him to what we saw in the first month of treatment. We have not been looking forward to this phase, even tho it means we are so close to the finish line.

Luckily for us we did not start this new phase today. Like the start of all prior phases Cristian’s body needs to be strong enough to withstand the chemo. Following an early morning trip to the hospital and blood tests we discovered that his ANC (immune system cells) were lower than the threshold. This means another week off.

This past week has been amazing for our family. We were blessed to have Mimi (my mom) come visit for a few days before the new phase. Cristian had so much fun with her here and was in a wonderful mood. We went on walks, played with bubbles, even made stickers together. So much fun and great memories!

We look forward to another week of high spirits and our family being together. We continue to thank God for watching over Cristian and our family. We thank all of you for the concern and support you continue to provide.

Well after 1 week in the hospital, we were finally able to come home. Bigger picture we had been in the hospital 13 out of the past 14 days including the chemo treatment and this issue. This was a big drain on all of us. Both Maria and myself had been switching turns daily at the hospital the entire time. The past couple days were especially taxing because the requirements for leaving kept changing and while we thought we would be leaving, we were told it was not time.

During a conversation with the doctors they explained that while they did not know what caused his blood levels to get out of balance, they are fairly confident that the pancreatitis was a result of a medicine they recently moved us to. This was extremely frustrating to hear, that the situation and pain Cristian experienced could have been avoided. As a result of this reaction we have reverted back to the original medicine Cristian was taking which was keeping his immune system suppressed. While that isn’t a desired outcome either, it is a “lesser of two evils” situation.

Because Cristian has now had pancreatitis two times in a relatively short time period, he is now at risk of getting it more easily in the future. We will be evaluating all chemo treatments and medication going forward to avoid things with this known side affect.

Even outside of medication there are other things which can cause pancreatitis, one of which is a fatty diet. Over the past couple months Cristian has been a very selective eater and primarily ate bacon or potato chips. These represent a large part of his diet, and are now no longer allowed due to the increased risk of future pancreatitis. With all of the things going on in Cristian’s world, here comes another change. We now must find new foods for him to eat and ensure that we aren’t doing anything at home to cause issues. Low fat and high protein foods, here we come. I doubt Cristian would be excited to read this, if he could read.

This past week has also added a new aspect to Cristian’s treatment which is less than desirable, constant rotation of doctors. During this 1 week stay we saw different doctors from one day to the next. Not as a result of new tests or specialists, but merely because of the rotation schedule they have implemented. While it’s understandable that a single doctors can’t work every day in a 1 calendar week period, the number of new faces (each with limited knowledge of Cristian’s prior days history) was disappointing. Hopefully this was the last time we will have an extended stay and won’t have to deal with the rotation schedules.

Aside from all that we are elated to be home. Seeing the kids play together, running around screening, and being able to put Cristian is his own bed are so rewarding. These are definitely “little things” but they make you feel so good as a parent after not having them for so long.

The past couple days have been a little roller coaster for Cristian in his recovery. We have seen a consistent improvement in his blood levels and glucose remains solid. This has given him more energy to play and get out of bed. On the downside he has started complaining of belly pains. This morning in speaking with the doctors we said he is acting similarly to how he was when he had pancreatitis earlier this year and asked them to check. Confirmed, his belly pain is a result of pancreatitis.

The doctors are unsure what has caused him to get pancreatitis again. It could be a combination of the chemo and vomiting, or a reaction to some of the medicine that he received following the chemo. It sounds like there is no real way to determine the exact cause, all we know is that we need to get him feeling better.

Like the last time Cristian had pancreatitis we have to wait it out. There is no way to speed up the healing other than to give your gut a rest. No food or water, even if he asks for it, until tests confirm that the pancreas is functioning normally. To make sure that his body is still getting the nutrients that it needs, we will be starting IV nutrition tomorrow. While not as beneficial to the body as digesting food, this helps fill the gap until he can eat normal again. In order for us to go home Cristian will need to be able to eat and drink somewhat normally.

While we wait for that to happen we will be working to keep Cristian as comfortable as possible. With his blood levels improving he is now able to move about the room, but the belly pain causes him discomfort. We are using meds to take the edge off and distracting him with toys and games to try and make thing a little more fun.

We thank God for all the healing and blessings he has given our family to this point. We ask that he continues to watch over our family and get Cristian out of the hospital ASAP so he can be at home playing with his sister and sleeping in his own bed. We ask that you all add a prayer for Cristian as well!

For those old enough to get the reference in the title, you already know what this post will be about. For the rest, we are back at the hospital.

While Sunday was a pretty good day for Cristian, Monday was a bit of a bumpy ride. He spent most of the day with very low energy and not eating or drinking throughout the day. As the evening approached we worked to try and get something in his stomach, strawberry lemonade which he usually enjoys. Good news is he did take a few drinks and seemed to enjoy it.

Bad news is he threw it up about 30 minutes later. This was his first time vomiting of the day and not what you want to see when someone isn’t eating or drinking for fear of dehydration. After we got him all cleaned up and comfortable watching TV, his energy seemed much better than before but he obviously wasn’t feeling well. To offset the fluid he lost we worked to have him drink some more water. That didn’t stay down and we were now headed down the dehydration path. His eyes were starting to develop dark circles, skin color was fading, energy was low.

After the third throw up we made the decision that it was time to head into the ER. His circles around his eyes were worsening and things were headed in the wrong direction. So 10:30pm we got in the car and headed back to the hospital.

The ER waiting room was empty which meant no wait for us, thankfully. While the waiting room was empty, almost all of the ER rooms were taken. We got their last room which was normally reserved for patients with psychiatric issues. But nonetheless it got the job done and the nurses got to work. Upside of it being so late is that Cristian slept through almost the entire ordeal of accessing his port.

Now that he was hooked up they drew blood to determine the source of his issues. We discover that his glucose is very low, 47, which presented some concern on top of the dehydration. They started fluids and glucose to begin correcting the situation while determining next steps. Just like the ER being full, the normal hospital beds were all occupied as well. Knowing that this situation warranted admission and monitoring, the Dr looked for space to get us in without having to transport us to another facility.

So at 2am off to the ICU we went, for two main reasons. First we needed a room and the ICU had space. Second the very low glucose levels presented a risk and needed close monitoring to make sure his body was improving with what they were giving him. Upon arrival we were met by a team of folks to get us settled and asses the situation. As this was our first trip to the ICU it was interesting to see the difference compared to the “normal” hospital admission. More people, more support, what felt like more structure. All good to see given Cristian’s current situation.

Finally at about 3am things settled down for the night. Cristian had been in and out of sleep from all the interruptions since we arrived almost 4 hours earlier. We were both able to sleep, even with nurses coming in frequently to check his status.

As we got to daylight hours Cristian’s vitals are looking better. His glucose is back in normal range and seems stable. This is one thing checked off the list. His body is still dehydrated and his blood is a little acidotic. Since he is responding well to these treatments we will continue down this path until it is safe to go home, possibly tomorrow. Cristian has had some water this morning and been able to keep it down which is awesome. Not quite ready for food but we will get there.

We are praying that God watches over Cristian and heals his body so we can go home. We spend too much time here lately and just want Cristian to be healthy, happy, and at home playing.